Insurance Companies & PrEP User Discrimination

In 2016, Rob, a digital media professional in his fifties, went to Mutual of Omaha to purchase long-term care coverage. He was healthy and so was his husband, and both were HIV-negative. But one issue was a non-starter for coverage, they learned later: They were both using Truvada to prevent HIV transmission. Truvada, manufactured by Gilead, is the brand name of PrEP (pre-exposure prophylaxis) and rated as effective by the Centers for Disease Control and Prevention for preventing HIV transmission.

The denial letter was very specific, saying, “based solely on the information provided, we are not able to offer coverage. This is due to daily use of Truvada for HIV prevention.”

“We were astounded,” Rob told A&U. They appealed twice, and were still denied. Then they went to Lincoln Financial, hoping for a better result. “We talked to a product manager who sent us to underwriting, and underwriting said there shouldn’t be a problem,” Rob said. But they were still denied.

Finally they went to New York Life, working with a health insurance broker, to get an annuity program, which is similar to typical long-term care plans, except that the premium is paid up-front. The third company was the charm.

Rob and his husband went on PrEP to be sure they were protected in case they opened up their relationship. And long-term care coverage, according to Rob, seemed prudent. He underscored the absurdity of the companies’ risk management strategies. A couple being denied insurance for using a drug that’s up to 99 percent effective in preventing transmission of a virus is like having car insurance cancelled for wearing seat belts.

“We should be ideal customers. It was the first time in my life I felt actively discriminated against. If we never took PrEP, and had HIV and were unaware of it, we probably would have been easily covered. You’d think that situation would be a bigger financial risk for the company.”

Rob’s insurance broker, Aaron Baldwin, agrees. Baldwin, who worked at New York Life for five years, said that insurance companies are not technically discriminating against gay men when they deny policies based on PrEP usage. It’s that, typically, underwriting doesn’t understand what PrEP actually does.

“HIV drugs sit on a list of prescriptions which lead to an automatic denial for long-term care and disability,” Baldwin said. “When Truvada was approved to prevent HIV transmission, nobody went to the insurance industry and told them that Truvada was multi-use.” And nobody told them to code Truvada differently than, say, HIV treatments.

Baldwin went back to his former colleagues at New York Life and informed them on what Truvada does and why it shouldn’t lead to an automatic decline or even reduce a customer’s rating. And he showed underwriting why his customers were an excellent prospect. Unfortunately, there aren’t enough experts like Baldwin willing to do this.

“Insurance companies just don’t understand, and they won’t do the deep dive to make good decisions unless someone holds their hands and walks them though it,” Baldwin said.

There is a limited, though growing, number of life insurance companies that offer insurance policies for people being treated for HIV/AIDS. There are no figures on how many of the nearly 800 U.S. insurance companies have denied coverage for life, disability, or long-term care to men or women on PrEP, however. But based on Baldwin’s experience with “hand holding” underwriters, it can be assumed that most of them will automatically deny coverage for those who use it.

“We have heard about the problem for a while and even though I have only seen one or two denial letters, I suspect it is fairly widespread because people are not reporting it,” said Courtney Mulhern-Pearson, senior director of strategy and policy for San Francisco AIDS Foundation.

Mulhern-Pearson said the California Department of Insurance told her they had not received any complaints about denial of coverage and were not able to quantify the problem.

“We encourage people who have received a denial to file a complaint with their state’s department of insurance. We need to get numbers on this,” Mulhern-Pearson said. She added that she does not recommend going off PrEP or paying for it out of pocket to avoid detection when applying for coverage.

After The New York Times published a story featuring Dr. Philip J. Cheng, a gay doctor denied disability insurance due to his PrEP use, New York state financial regulators opened an investigation in February. California quickly followed suit, and its Insurance Commissioner wants anyone in the state to come forward if they feel they’ve been denied insurance based on PrEP use.

Larry Buhl is a multimedia journalist, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.

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